Preliminary diagnoses via blood test in 2009; Is biopsy confirmation worth the contamination required?

[Jula]

I will admit that when I was told I would have to eat gluten before getting the biopsy that would definitively diagnose Celiac for me, I was kind of psyched when I thought of all the things I would eat and enjoy since going gluten free in 2009.

I was diagnosed that year after the results of tissue transglutaminase testing combined with persistent anemia (blood work also measured this) and a skin rash that definitely turned out to be gluten related (dermatitis herpetiformis) although it was never biopsied.

For various reasons, I was never able to go for any follow-up testing, including the biopsy, as recommended by the diagnosing physician. I did, however, immediately go gluten free as much as humanely possible. There were a number of contaminations over the years as I was caring for parents who were not gluten free and who were going through enough so I did not feel good about depriving them of many of the things the loved to eat.

I am about to have my first endoscopy, primarily to assess any damage that has been done to my small intestine over the years and to establish a baseline, but I thought it would also be a good time to do the biopsy and get the definitive diagnosis. My gastro doc agreed.

But then his office called to say I would have to consumbe gluten for 6 weeks prior to the surgery. I freaked. I couldn't imagine feeling that bad for that long and couldn't figure out how I would function. I thought I would have to eat a meal or two, especially being that I have become more sensitive and can feel the impact of someone stirring my gluten-free pasta water with the spoon from their lots-o-g pasta. It usually takes 2-3 week to get rid of all of the symptoms, but if the dermatitis herpetiformis comes back, that remains for months or more, depending on the weather, my stress level (I tend to give in for the need to scratch the insane itch more) and a few other things.

I spoke to my Gastro and we negotiated down to 7-10 days of gluten eating, but he was not sure it would give him all of the info he needs for the biopsy/diagnosis and I am increasingly worried that, judging how eating gluten shut me down, caused my asthma to get worse, my moods to swing wildly and to become so bone tired and joint sore that I couldn't make it up the subway stairs and so sat down and immediately fell asleep for about 10 minutes before someone shook me awake ---- all of which caused me to have someone look into what was going on with me, being that my doc at the time kept diagnosing different symptoms as issues and trying to give me more pills to treat them all.

None of that helped. Going gluten free did.

I also found out I have at least one of the genetic markers for celiace. I was adopted, so I didn't have that info before.

I know this is not a unique story for people with Celiac pre-diagnosis.

My question is: Will having an unquestionable diagnosis from the biopsy be worth ending this and starting next year feeling like crap, barely being able to function, likely depressed and a bit manic, and too tired and sore to move much at a time I have been battling to have my life back after being a very long term, 24/7 caregiver for my parents and getting lost in the serious shuffle of all that?

Thank you to all of you who take the time to read and especially to those that take the time to respond and help me out of my vacuum!

I need some perspective on this, please, because I am becoming increasingly anxiety-ridden about this but I want to do what will be the most beneficial to me in the long term.

Thoughts?

[trents]

Jula, welcome to the forum.

What possible benefit would having an official diagnosis give you at this point in your life? You already have medical test evidence that you are a celiac (antibody tests and genetic testing) and the symptom improvement when you went off gluten confirms what the testing already pointed to. Why on earth would you risk damaging your health by going back on gluten to get further confirmation of what you already have proved? You are now 15 years older than when you first went gluten free and your body will not tolerate the abuse it would back then. Call your GI doc and tell him you have decided to proceed as you are without the gluten challenge. If you want to go forward with the endoscopy to check for upper GI health in general, I can understand that but I certainly would not go back on gluten just to enhance the chance that you will receive additional confirmation of what you already know to be true. Are you having any other upper GI issues that you want to get scoped for?

Having said all that, it sounds like you may need to double down on your efforts to eat gluten free and now have the freedom to do that since you aren't any longer caring for your parents.

[Jula]

Thanks, trents, for both the welcome and the perspective. That is exactly how I'm feeling at this point. The main reason I was considering this particular confirmation is because 2 primary care physicians, one an internist, had said this should be done because they could not be sure based on the information I have that it is celiac and not gluten intolerance.

When I asked why that mattered, either way I would have to remain gluten free, the internist especially insisted that she would have to watch for a different set of repercussions on other organs.

I could find no proof of this but the questions she raised made me think I should have a definitive diagnosis.

But now knowing that it's more than a meal's worth of contamination needed, I don't think I can do it, although  the occasional contamination from eating at a friend's place or restaurant may still happen and if it does and I end up with the rash again, I could get that biopsied and have the same results, it seems.

Thanks, again.

[trents]

Jula, terminology can be confusing and the terms "gluten sensitive" and "gluten intolerant" are used by different people to mean different things. That's why I stick to using "celiac disease" and "NCGS" (Non Celiac Gluten Sensitivity) because those are the technical terms used by the medical community and it eliminates the confusion.

As you point out, regardless of whether you have celiac disease or NCGS, the antidote is the same - total abstinence from gluten. There is this misconception out there that NCGS is harmless, just uncomfortable and inconvenient so you don't have to be so careful as you do with celiac disease. I'm not so sure I buy into that. Especially since some experts in the field of gluten disorders believe that NCGS can transition into celiac disease. And even if it doesn't, there is at least anecdotal evidence that some with NCGS experience harm to non enteric body systems from continuing to consume gluten. We actually know more about how celiac disease engages the immune system than we do about  how NCGS engages the immune system. These two may not be as neatly separated as we historically have been used to thinking. Yes, it is true that gluten disorders can affect various organ systems and not just the small bowel but that may also be true of NCGS and not just celiac disease. I just think there are gray areas here we don't completely understand yet.

The fact that you get this rash when you experience gluten contamination strikes me a being very telltale. Can you describe the rash? dermatitis herpetiformis has a characteristic appearance to it. The rash pimples have tiny pustules. Celiac disease is the only known cause for dermatitis herpetiformis. So, if you have dermatitis herpetiformis, you have celiac disease. Many dermatologists do not know how to properly biopsy dermatitis herpetiformis. So, if you pursue that route, do some research and find one who is experienced in this. And the other  problem typically is being able to arrange an appointment when you are having an outbreak. I suppose you could make an appointment and then plan on eating gluten just previous.

I don't know where you live and what your medical system is like but as a U.S. based person I think of my doctors as working for me, not the other way around. I don't acquiesce to them just because they have a medical degree. I'm capable of doing my own research and making decisions that make sense to me. I'm the one who has to live with them. Of course, I certainly value the physician's input and will factor that into my decision making.

[Scott Adams]

You may want to look at this thread before you proceed:

 Also, I am not sure why you would "negotiate" a 7-10 gluten challenge, when the science indicates that such a length of time is likely not long enough. 

Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy:

Quote

"...in order to properly diagnose celiac disease based on serology and duodenal histology, doctors need patients to be on gluten-containing diets, even if they are causing symptoms, and this is called a "gluten challenge."

• Eat gluten prior to celiac disease blood tests: The amount and length of time can vary, but is somewhere between 2 slices of wheat bread daily for 6-8 weeks and 1/2 slice of wheat bread or 1 wheat cracker for 12 weeks 12 weeks;
• Eat gluten prior to the endoscopic biopsy procedure: 2 slices of wheat bread daily for at least 2 weeks;

and this recent study recommends 4-6 slices of wheat bread per day:

 

 

[Jula]

Hi Scott,

Thanks for the great information.

The "negotiation" is my euphemism for the discussion with the nurse at my doc's clinic and eventually, the doctor. It took place because they said I would have to be on gluten again for 6 weeks prior to the upper endoscopy/biopsy.

As I stated previously, I am highly reactive to tiny amounts of gluten and the impact lasts for weeks and can be debilitating. The first time I had COVID I thought I had been contaminated at a friend's house because I had all those symptoms (extreme joint pain, muscle pain, exhaustion/fatigue, coughing, worsening asthma attacks, more) but no fever. It turned out to be COVID and the fever came a day after the initial group of symptoms.

Granted, not all contaminations are the same in the intensity of their impact, but to have gluten every day for 6 weeks --- I know I could not handle it and as I'm self-employed I could not afford to work minimally for much of that time. Hence, the discussion/negotiation/whatever you want to call it.

They asked me how long I thought I could tolerate it, I said maybe a week. Then I was contaminated at a restaurant and was reminded of the impact for the following 2.5 weeks and I started getting anxious about doing this to myself for such a long time, wondering how long it would last and worrying that the dermatitis herpetiformas would come back which took more than a year of excruciating itching to clear up completely.

So, that's the back story.

Neither the doc or the nurse mentioned 2 weeks, but it doesn't matter at this point. I don't think its worth it even for the one week, especially if as you say they may not be able to gather any information from that, although I don't know how that would be true being that my immune system knows with less than a crumb and gets busy attacking my small bowel. I can't imagine that wouldn't show up in there, but I guess that could be the case, so again, not worth starting the new year feeling like crap and unable to get the money I need to pay my bills/survive in the bigger picture.

The blood work that was used for my initial diagnosis was done after I had been eating gluten my entire life, so well beyond the gluten challenge.

Thank you, though, for taking the time to share the resources and your perspective!

[Scott Adams]

Since your symptoms are so severe and obvious, I can't really think of a compelling reason to get the confirmation, especially when weighed against some of the downsides of having an official diagnosis that are mentioned in the thread I shared. For people in the UK and other countries where their health care system offers food subsidies for those with celiac disease it does make sense--and most of those counties also have universal healthcare where the diagnosis would not be a factor.